Surviving the Rollercoaster
Last updated: October 2023
“I am just so over being sick and tired!” I want to scream but instead I’m sitting in my room, holding my breath, while angry tears silently roll down my cheeks. A little over year and a half ago, my whole world fell apart and I barely made it out alive. I found that I was a wheelchair bound, oxygen dependent, unemployed, and divorced mom.
Feeling lost, I had to figure life out for myself and my children and I needed to get it right yesterday.
Life sucked, I wanted to crawl into a hole but instead fought through it by just getting into survival mode. I did my best to get through each day while feeling like my feet were incased in concrete. First, I found a job even though I felt like absolute trash, I went in with a smile on my face. I slogged through each day, not even having enough energy to consider anything close to joy.
Then one day, I realized that I could not keep living like this. Deciding that I actually had options and I chose to start exercising them. I found a better job, closer to home that paid better. Still, I was dependent on my wheelchair and fighting near constant depression but at least I worked with good people. I got the smallest taste of joy and it tasted so good! A taste just wasn’t enough. I wanted it more… I wanted to be whole again.
A healing year
For the last year I’ve been focusing on healing both emotionally and physically. I took the time to do the painful work of healing from a painful divorce, finding my way back to my own heart, and changing my life trajectory. Learning to stop making excuses for people and experiences that no longer served me and finally choosing myself.
I found balance and peace. In time, I realized that I was happy with me and the life I'd chosen for myself. Soon, my body began to follow my heart and I began to feel different.
Slowly, the strength returned to my legs and my pain lessened. I could use my rollator for short distances, like getting to my desk. Then I was able to drop down to just using my cane to get around. I still used my chair for family outings like theme parks and school shopping but it felt great to be more mobile. Then it happened… I met someone and went on a date. I was feeling pretty bold so I went to dinner without my cane. It was beautiful!! I felt so free!
Happiness could not even begin to describe the feeling! I stopped using my cane for longer and longer distances until I just stopped using it altogether. It’s been about a month now without my cane and I have never felt freer! I love it! I focus on the joy and enjoying the moments, even though I know it could come crashing down at any moment… and it does.
Everything changed a just week away from infusion day, this is usually when my superhero serum starts wearing off. It really was my fault, I let feeling good get the best of me and did more than I should have. I felt it creeping up my body during church. First, my ankles got really tight then my knees started to ache. Soon my hips reacted to my knees and my back joined in the fun. I knew that this decline was going to be fast and hard.
I was hoping that I could just sleep it off. Nope! Lupus was not going to let me off that easy. Today, the fatigue is so heavy and the pain so intense that I’ve barely been able to leave my bed. I simultaneously want to be comforted and I want to be left alone. Thinking feels like a herculean effort right now. My thoughts spiral between anger, fear, and just wanting it to pass.
Old fears that I thought were gone, tried to sneak into these moments. Thoughts like ‘how can I have the audacity to invite someone new into my life?’, ‘will he think I just want him to take care of me?’, ‘what am I doing to my kids?’, and ‘I should just walk away from him before we get in too deep?’ ‘I don’t want to be a burden to my kids but I need their help right now.’
I know, I’m not the only one who has these thoughts. Lupus wants to be the nightmare that haunts us in but I’ve learned to face her in the light.
Survive and thrive
The ups and downs of living with lupus is like riding the world’s longest roller coaster in the dark. We can’t see what’s next. We often just try to keep your hands and feet inside the ride, while telling ourselves to believe it will be okay. We hold our breath and wrap our fingers tightly around anything we can hold on to. Each twist, dip and bump increases our fear and causes us to tighten our grip. It just doesn’t feel okay when things suddenly get topsy-turvy and upside down. We get disoriented, dizzy and completely unsure of ourselves. The problem is we want to just quietly hold our breath and stay in that feeling because it sucks but it’s “safe”, right? Wrong!
I heard someone say that you feel the drops on a roller coaster more if you hold your breath and brace for the drop. The ride can become enjoyable if you just give in to the waves, throw your hands up, and scream as loud as you can. We have to “scream”! We must take the time to use our voice to address our feelings, address the things we can control, and reach out for help to make our lives better. “Screaming” can help us accept where we are, move through the moment we are struggling in and get us refocused to move forward our lives as a whole.
The truth is, it really is okay to acknowledge that this ride sucks. It is okay to be angry at the disease. It’s even okay to be frustrated by a limitation that rears it’s ugly head. What is not okay is getting stuck in the difficult parts of this lupie life. A therapist in my office presented a study that said gratitude can be as powerful as Xanax, when we write it down. There is so much to be grateful for. It doesn’t have to be big. For example, today, I’m grateful for the beautiful blue and tan butterflies that I saw outside of my office. Gratitude helps us to remember these challenges are just a moment, a week, a month, or even a season but never forever. Things might even be twisted, backwards, upside down or even underwater for a while but that part of ride will end, we will come up from the dark and the light will eventually return.
Life with lupus is hard enough in and of itself. How we look at and move through our difficult moments, dictate how well we cope with the challenges we face each day. I’ve found that acknowledging the things that make life hard, even being angry about it yet still finding humor, gratitude, and joy in these moments makes this lupie life bearable. There isn’t much we can do about the rollercoaster. We can’t just get off the ride, so why not throw our hands up, enjoy the ride, and sometimes even just scream!
How are you most likely to respond when someone offers you unsolicited advice about your lupus?